IDSA comments to TBD

not much coverage of this response to the TBD working groups recommendations to Congress.https://www.aldf.com/wp-content/uploads/2018/11/IDSA-Comments-on-Tickborne-disease-working-group-report-2018.pdf

Funny how they complain about lack of transparency when this is the most transparency I've ever seen from TBD guidelines / recommendations. They have archived videos of their sessions, meeting notes, etc - all freely available to the public. That is basically the opposite of previous meetings where IDSA was a majority stateholder (like Dearborn).

Also funny how they don't feel the need to provide any sources to prove any of their points. Not suprising though. Why use evidence when you can make claims like "widely accepted scientific evidence" without providing any evidence. And then lobby the CDC to support you and then no one actually reads the study, as they blindly follow authorities.

Look at how rarely the study that is used as a reference to validate the 2 tier test is actually accessed:https://jcm.asm.org/content/33/2/419/article-infoAnd I think the majority of people accessing it are Lyme patients who actually read the studies and ILADS dr's who actually read them.

"There is clear, widely accepted scientific evidence indicating that a 10-28 day course of antibiotics, depending on the stage of Lyme disease, will kill the Lyme disease bacterium in humans in all but the rarest of cases"

They stated this right after stating they don't have tests that could determine "cure". Seems hard to have incontrovertible evidence of cure when you admittedly don't have a test that assesses cure. Absolute morons these people. This reminds me of a scientific paper I read yesterday that claimed Kratom could be deadly when mixed with other drugs and then went on to list the cocktail that killed people "fentanyl, morphine, datura, propylhexedrine, caffeine, modafinil, carisoprodol, diphenhydramine, o-desmethyltramadol, kratom". Right.... 3 deadly opioids, 2 deadly deliriants, a muscle relaxer, a methamphetamine analogue, a prescription stimulant, and caffeine.... probably the Kratom that did them in... I don't even know if I can take science seriously anymore. What an absolute circus

I agree. the biggest challenge is lack of diagnostics. if there was a test that was a 100% accurate, this would idiot proof the diagnosis, making it such that any PCP with half a brain could then refer out to a qualified doc to treat. the whole process breaks down here i think. you fix that, and you may prevented a huge population from going chronic.

I agree with that, but I feel like the diagnostic process is even more fundamentally flawed then that. Improved testing would be nice, but don't we need to figure out what to test for?

The IDSA is still claiming that Borrelia Lonestari, Borrelia Andersoni, "relapsing fever" borrelia's are all harmless. So they are not bothered to develop tests that pick up those. The current testing in the USA for "Lyme" is woefully atrocious for picking up B. Mayonii, B. Garnii, and B. Afzelii. Then we have to consider testing for co-infections.

Even if they improve the B. Burgdorferi testing 10 fold; it will not help patients with any of the other Borellia or co-infections.

I'm surprised the TBD WG isn't discussed more often here.Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!Kid#2: Still sick now despite being treated for years but doing better (not well yet).Kid#3: Generally good but relapsing off/on. Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)Treating with herbals now.

Psilociraptor said..."There is clear, widely accepted scientific evidence indicating that a 10-28 day course of antibiotics, depending on the stage of Lyme disease, will kill the Lyme disease bacterium in humans in all but the rarest of cases"

They stated this right after stating they don't have tests that could determine "cure". Seems hard to have incontrovertible evidence of cure when you admittedly don't have a test that assesses cure.

This is what I'd been wondering about. I don't follow all this too closely as it's so frustrating and puts me in an argumentative frame of mind. As far as I understand it there are no studies that show that 10-28 days is sufficient. In fact as I read it they seem to be pointing to the idea that long term antibiotics don't work but that's not the same thing as saying that the current treatment is adequate is it.

Does anyone know what these 'widely accepted studies' are?

When I looked over the study pointed to by Health Canada to indicate the reliability of the two tier testing it seemed that they defined late stage lyme as 8 weeks. Well and fine but that means they can't really speak to the reliability of the test in truly late lyme can they. Ugh.Bullseye rash August 2013. Following Buhner's protocol for Borrelia, Babesia and Bartonella since July 2017

I assume this is due to years of inaction by the CDC, NIH, etc. the failed vaccine, etc.

i remain hopeful that this TBD WG will change things for the positive, and dont get hung up on the vaccine component of it. the fact that its a multifaceted group, it seems more heavy on non-IDSA members, and the other government members seem to want to change.

i often wonder too, if the HHS needs to allocate money to something. often times like in a company in annual budget planning, if they dont budget for next years money, they lose it. that it maybe that someone cant justify anymore money on HIV, and internally someone wants to keep the budget in HHS so, they now want to finally focus on TBD. I will be curious to see what happens to the spending on HIV, if the budgets are approved for TBD, the money has to come from somewhere. just a thought

Psilociraptor said..."There is clear, widely accepted scientific evidence indicating that a 10-28 day course of antibiotics, depending on the stage of Lyme disease, will kill the Lyme disease bacterium in humans in all but the rarest of cases"

They stated this right after stating they don't have tests that could determine "cure". Seems hard to have incontrovertible evidence of cure when you admittedly don't have a test that assesses cure. Absolute morons these people. This reminds me of a scientific paper I read yesterday that claimed Kratom could be deadly when mixed with other drugs and then went on to list the cocktail that killed people "fentanyl, morphine, datura, propylhexedrine, caffeine, modafinil, carisoprodol, diphenhydramine, o-desmethyltramadol, kratom". Right.... 3 deadly opioids, 2 deadly deliriants, a muscle relaxer, a methamphetamine analogue, a prescription stimulant, and caffeine.... probably the Kratom that did them in... I don't even know if I can take science seriously anymore. What an absolute circus

Ridiculous. A laundry list of pharmaceuticals and kratom is to blame.....

I experienced the ignorance of Psyche docs when my father was treated by a 'geriatric psychiatrist' - he put him on the antipsychotic med: Olanazapine...which is one used when all else fails. My dad was already a diabetic. And once he was on the Olanazpine...they couldn't get his blood sugars down into range.

....and the reason he was put on antipsychotic meds? (He tried several) was because after surgery in the hospital, they gave him Ativan and Zopiclone for sleeping. (my father never had anxiety or sleep issues)I wasn't aware of this.After about 6 weeks in the hospital...he went home...and had terrible anxiety....his GP prescribed ativan (to be taken 4 X day...everyday) plus Zopiclone. you can't give someone ativan every day and zopiclone - for six weeks and then nothing....cold turkey.

That was the beginning of the end for him... ended up in the Psych ward...and put on antipsychotic meds and anti-depressants...and he turned into a paranoid zombie.....could barely speak at one point....Criminal.This same hospital put him into a diabetic coma - after the Dr. switched up his insulin...and they gave him a dose before bed....without any food.